I have had agonising back pain for over 2 years and unable to walk sit or stand for longer than 5 mins and am very uncomfortable when laid but that's the best position I rarely sleep well.

I had a bulge at l4/l5 that's been removed and 5 mri's 8-9 a and e emergency admissions as well as countless non emergency admissions.

Before they removed the bulge I had 2 epidurals to try help with pain they never worked had tens machine that did nothing also acupuncture that never worked. The pain is so intense it's in my back my hips my legs down to my feet my legs are so weak from my back my muscles are still there and sometimes I walk and feel they have power other days it's gone. I am 27 and have four children I dream of getting back to work I am deeply depressed as I feel it's hopeless they say there's nothing they can do but pain relief and pain management.

My live has been ruined by this my children are 10 months 3, 7, and 8 and I can't spend more than five minutes stood up I have a wheelchair but it's not enough when I know sometimes I have leg power but still the pain is there the drugs rarely make my life comfortable but they say I am on a very high dose equivalent to 725mg morphine.

It's not good I want more surgery but they say they can't perform surgery when they have fixed the disc and it had no benefit please someone must know something I can't carry on this way my children my life my partner are all affected by this everyday my life is a sofa and I am 27. Would love to walk my children to the park with out pain to enjoy my children again I was so active strong 6ft healthy weight athletic figure then out of nowhere over night it started as back ache and now it's a monster bigger than me. I have put weight on and can't shift it as I can't exercise I struggle with passing urine again as it was before When nerves were slightly compressed before they Un compressed. How can I get help

16 Replies

As strange as this sounds I think you would benefit from getting back in the gym I'm not talking about anything close at this point to what I can only imagine you would have done previously but with a good personal trainer on a rehab programme to work with you at gradually building up your muscle strength & working with you on your bad days as well as good. I am talking from personal experience here I'm not saying that I'm on anything close to the cocktail & strength of drugs you take or have the same condition, I'm suffering from osteoarthritis in my hip & I'm heading towards a hip replacement eventually but my pain management consultant was the person that sent me to the gym to my personal trainer & I must admit I am benefitting. I'm still in severe pain I get sent home sometimes as he can't do anything when I'm bad but I get rescheduled to later in the week. I'm not saying that this will cure you or get rid of your pain but I know on talking to some of my personal trainers other clients that were previously written off by the medical world told they would never work again & then were referred by the same pain management consultant to go to the gym his life has improved & he is working again.

I wish you a lot of luck & hope you manage to find some form of pain relief get your life back & get your meds dropped down as I think your correct in wondering how long you can safely stay on such a high dose of pain meds.

Thanks for your reply i Do agree with what you say I am super driven but every time I push hard and try it just keeps hitting back I am currently part of a neuro rehabilitation program which is aimed at seeing how I am gonna learn to live with this immense pain I know about it if I take my meds late even by an hour but even on the dose I am on the pain is crippling I just want a normal life

3 years agoHidden

Hello

You ask how long you will live on an Opiate, that really is not the point here,

Over thirty years ago I was introduced to Opiate medications and I am still here. You say you had several lumps removed ten years ago, I wonder if they are now a historic condition and do not have anything to do with your condition now, Forgive me if that is not the case.

What I do feel, again you do not seem to have mentioned what your problem is, that it is too do with the spine, again I may be wrong and you have had an operation on one of the discs.

The problem here seems that the operation you have had failed to fix what is wrong, and now your problem is causing all these problems, did your back problems start at the time of removal of bulge?. Did you have the operation abroad or was the procedure carried out in the UK?.

Looking at your medications your GP and Pain Clinic seem to have got your condition covered, All I can suggest is to try and tone up your body with very gentle exercise, use the coping skills that were shown by the pain clinic.

The pain medications can be changed for other medications of the same groups so that will not be a problem, so work with your GP and clinic to find a better combination of pain medication.

The question you have asked at the beginning of your blog how long is not really the question to ask, the most important question is can they suppress the suffering that is caused by my condition. I do not feel that you are on the slippery slope of stronger and stronger medications as that would be counter productive for many good reasons.

Keep talking with your GP , something will show in the future, at this time you are not coping and it may be a good idea to talk to your GP and let him arrange an appointment with a Occupational Therapist, who will assist with getting around the home and out and about, generally there is always something they can do.

I need to point out I am no GP and I am only a lay person who has an interest in people with needs and support, Your GP is the main person who has your interests at heart, He is in partnership with you for your health. Work with him and research your condition try the site NHS CHOICES, that will give you a chance to understand what is going on with your b

I have the muscle and am strong but I feel like the bulging disc they operated on because it was limiting motor movements in my legs and stopping me from passing urine. I had to be cafiterised due to nerve compression The surgery has had no affect I feel they are happy to label it as acute pain and chronic pain but not give me a true diagnosis my legs have shooting pains and tingle and sometimes feel lame then I have a day When I can walk around inside my home a little and it's great then the next day I can't move for pain.

I just feel they would rather give drugs than treatment.

My gp has simply told me that's it for life get your head round it please, and I can't I feel accepting is giving in am a fighter I was a provider now Am useless 6 days a week. My mri's scan prior to the op had a few bad discs yet only the one with a big bulge was treat I had 5 mri's because they didn't think my nerves were being compressed but one surgeon said he would do the op to trim the disc he said it's a 50/50 It help your leg pain he said it's not to treat the back pain. He only did the op because despite the mri's not being clear for nerve compression he said I had all the symptoms I had 8-10 weeks with 30% less pain In my legs then it started again weakness in my legs pain tingles. I can't give in yet........

3 years agoHidden

Hello

The problem that took you under the knife is generally performed when there is no other choice, Operations like you had has a 50/50 chance and now you have admitted that you have further disks that are compressed, this will be causing the nerves in the spine to rub and cause pain that you are suffering, therefore any more operations such as restricting movement of the spine at this time will possibly cause more problems than you have now.

The pain Clinic may be able too advise more treatments later on, I can personally understand the reluctance of further treatment.

One thing you could try,if they can allow it is some form of splint that is shaped to restrict the spine although that again may cause further problems..

Sadly I do not know what to suggest I am not a Doctor, and all I can suggest is have words with the Pain Clinic regards trying different medications. Possible Chiropractors may be an idea to relieve the stress on your nerves and spine, although again you will need to ask the GP would agree that this form of treatment is tried. One problem is you will need to pay for seasons as normally this form of treatment is private. Manipulation may work

I have been in a similar position to you re meds, every time I visited Pain Clinic or my specialist they would add yet another medication to the cocktail and no one ever checked my bloods for kidney function. In the end I was becoming a zombie, in pain but brain dead from the medications and I was finding it harder and harder to cope.

After a long discussion with my GP we decided to slowly reduce one medication at a time and test the difference that reduction was making to my pain management. I now have a much smaller cocktail of drugs daily some of which I adjust daily depending on need, the result is much better brain function and a pain management I feel in control of.

I still have bad days, I still want someone to put me to sleep because I can not handle the pain but the good days are much better and I am able to work and function as a valid family member.

I wish you all the best and hope that you find a solution that works for you.

I totally understand that been there no one can truly understand the situation unless it hits them I've gone from a 6ft power house to a collapsed garden shed I feel immune to the drugs I barely sleep even on sleeping tablets I wake in pain that's the zombie broken sleep waking in pain horrid circle.I have the muscle and am strong but I feel like the bulging disc they operated on because it was limiting motor movements in my legs and stopping me from passing urine. I had to be cafiterised due to nerve compression The surgery has had no affect I feel they are happy to label it as acute pain and chronic pain but not give me a true diagnosis my legs have shooting pains and tingle and sometimes feel lame then I have a day When I can walk around inside my home a little and it's great then the next day I can't move for pain.

I just feel they would rather give drugs than treatment.

My gp has simply told me that's it for life get your head round it please, and I can't I feel accepting is giving in am a fighter I was a provider now Am useless 6 days a week. My mri's scan prior to the op had a few bad discs yet only the one with a big bulge was treat I had 5 mri's because they didn't think my nerves were being compressed but one surgeon said he would do the op to trim the disc he said it's a 50/50 It help your leg pain he said it's not to treat the back pain. He only did the op because despite the mri's not being clear for nerve compression he said I had all the symptoms I had 8-10 weeks with 30% less pain In my legs then it started again weakness in my legs pain tingles. I can't give in yet........

Hi stefanc, I'm here wincing in pain with every word you've written. I've been in a similar position to you, other than you seem much worse, I've been treated for the past 5 years with the pain increasing all the time, the NHS has been useless and I now have to wait 12 to 18 months wait on the NHS or pay privately for a dicsectomy you know what it's like, you'll do anything to stop the pain, so Iv'v decided to pay, but after your experiences I'm starting to have second thoughts. Also with regards to drugs I have the opposite problem than you Trying to get painkillers from my GP is like getting blood out of a stone. I really sympathise with you, it's terrible when you cant stand, or lie down, Iv'e ended up sleeping in an armchair, I really am unable to give you any worth while advice, unfortunately all I can give you is my wishes that there is something your GP can help with

My doses of painkillers are the strong they offered to change me on to ketamin thavailablet on the air ambulance it's only for emergencies how can I live with 4 young children on a regular dose of ket my life quality would be worse.

The drugs just add a problem to a problem but when you have no choice that's it. My gp tells me weekly when I call in pain complaint there's no miracle fix for it but yet they won't diagnose it anything but chronic pain even though they offer the strongest pain relief available, and I have many other symptoms like siatica, depression due to this and I am in and out of hospital regular and constantly calling gp's and always attend pain clinic.

Just keep your head up push go to a and e when it's bad they have to help even if it's just muscle relaxants the give you.

Hi Stef, Ive had a quick look through all your reply's and Bob does give very good advice. I just wanted to let you know about my own experience. I was a professional violinist, fully functioning, did lots of exercise and was very active and fit...before I got ill. I say this because you sound like I used to be. I was 27 when I got ill. There is something I think would really help you about not giving up and hope, I've kind of known it for several years but the best explanation of it came to me via Facebook so forgive the rhetoric (have put it at the bottom of the page)...like you I was a virtual prisoner in my own home, I couldn't sleep or even walk 5 yrds. It was only when I stopped trying to do what i thought was 'normal' things that i started to make any improvement. I am still in chronic pain but at least I do function better that before. I think hope can be really destructive and sends you on a roller coaster of emotional highs (when you think something might help the pain) and lows (when it doesn't help or makes it worse). It takes an enormous amount of energy to maintain the 'hope' cycle.Forget everything you thought you know about functioning and really listen to your body and what it needs. This has got to be all about you. I imagine it must be a nightmare for you with 4 children and one so little but, you have got to put your self first. You are not being selfish or thoughtless by putting yourself first when you are ill. it took me a long time to realize this. I love the way health practitioners of various shapes and sizes go around telling people that there's nothing else they can do, it's up to you now. It's all very well but without an enormous support network with 4 children you're not exactly in a position to think that much about your self. It really sounds like you need to find a way to put your self first though, even if its just a short period of time a day. One thing that occurred to me was have you tried mindfulness? It's a very effective technique and gave me the first opportunity to feel nothing (no pain) for years even though it's only temporary, it's such a relief i think it's well worth trying. I know things can feel desperate at times but don't give up, you will find a way through. Listen to your body and give it a chance to relax, it certainly can't hurt. It sounds to me like you are someone with a real zest for life and that's where your strengths lie. things can get better and until they do we are always here Good luck, sorry this is so long...i get a bit carried away sometimes. xxx

'Hope is the real killer. Hope is harmful. Hope enables us to sit still in a sinking raft instead of doing something about our situation. Forget hope. Honestly and candidly assessing the situation as it truly stands is our only chance. Instead of sitting there and 'hoping' our way out of this, perhaps we should recognize that realizing the truth of out situation, even if unpleasant, is positive because it is the required first step toward real change.'

Hi Jamie, i hope you don't mind me replying to your comment but have you tried a different GP? and have you been to a pain clinic? I know from my own experience that pain clinics can vary wildly in the quality of service they provide but do some research and find a decent one you can get to, and demand a referral from a GP. It is not the GP's job to withhold pain meds, and unfortunately there are lots of GP's out there who have no knowledge of chronic pain or how to treat it. They automatically think if you need strong pain killers you're some sort of addict trying it on. Shout, shout and shout some more at them. if your pain is as bad as you say then they have treated you very poorly indeed. Also, don't forget that everyone responds differently to treatment so what hasn't worked for Stef may well work for you, it's so hard to know what's for the best. I think in the end all you can do is get a second opinion and follow your gut. Good luck and don't let them get you down

Hi pinknosedcat, Thanks very much for taking the trouble of replying to the post I sent to Stef, Iv'e been a patient of my GP all my life, and as I'm having surgery next month. I cant see the point in changing, at the moment.but I see your point and agree with you, especially when I see the medication given out to our friends

I have suffered from depression for a long time and been diagnosed as Bi=polar, and although I don't really know if he thinks I'll become addicted as I was given tramado Solpadoll and diazipam, but I always have to see another of the partners, and she will only prescribe a minimum amount. Another thing is I live in Wales and we have a different system here, and the GP's are told not to prescribe these types of drugs,and their use is monitored. it's crazy.. Iv'e had this spinal problem for 5 years, treated as a hip problem then diagnoses changed, 2 years ago. Iv'e had every kind of therapy

physio, hydro, pain relief clinic 3 epidurals. In fact it was the head of the Chronic pain relief clinic

said there was,en't any thing else they could do other than take the pills, i said there must be something, I said I was prepared to pay,,

5 weeks later, I had seen the top spinal surgeon in Wales, had X-rays, MRI scans, pain killing injections into the nerve roots, he showed my wife and I the MRI scans, and there were 2 prolapsed discs continually pressing on the nerves, and I needed surgery as a matter of urgency. My GP had told me to tell him I could not afford to pay and could he carry it out in his NHS clinic. He replied there was a 12 to 18 months wait, or I could, have it done privately at his clinic, in three weeks.

The thought of waiting 12 months made me go cold all over, so that's what I'm going to do I'm sorry for bending your ear, but once again many thanks for writing, it's much appreciated

I have listened carefully to all the replies and one thing jumps out at me. Or lack of one thing. Something the pain clinic always drums into CP sufferers.

Pace yourself.

If you get a diagnosis of what is causing your pain you will be akmost welcomed with open arms. So many people never get that dianosis. Th pain is there and will be a huge part of your life for ever and a day. You have to learn to live with it unwanted as it may be. This is where pacing yourself comes in.

I hear from so many people how they want to work, play with their grandchildrem, mow the lan, run a marathon _ a thusad other activities. Just like they used to befor CP invaded their life.

You can't. That is gone.

It is like any disability - you have to lear to adpt what you do and how you do it.

You will have good days. So.... do something you enjoy BUT...don't keep doig that thing until the pain is so bad you have to stop. You have to learn yo stop while you still feel good.

Your family and friends are as much a part of this rehab ptocess as you are. Don't exclude them but explain how you feel. Children aren't stupid and can be told so much. If you need a sleep - have a sleep. Go for a walk of you want to and can. But again only walk a shorter distance than you used to.

All people who bedome disabled in what ever form be it CP, MS, amputee or sensory loss are in denial. That is part of the 'bereavement' process and perfectly normal. Some people take months some years some never come to terms.

All the leaflets are there to be heard so try them.

I am number one fan of the pain management clinic! Maybe cos we have a super one but they willlisten and talk with you.

Sorry this is long but felt it might help you. You will be a power house again but from completely different angle. And if you come back to this page again you will find toms of support and friendship from thosse who have been in your shoes.

your situation sounds similar to mine – I am not able to sit, stand or walk for more than about 4 minutes and have to spend most of my time lying down. It is horrible to go from being an active, productive person who is engaging with the world every day to someone who spends most of the time lying on a sofa. I'm 44, and was 38 when my back problem started. I had an operation I shouldn't have, and got much, much worse. And since then, have had 2 more operations. I have seen physios, osteopaths, acupuncturists, chiropractors. None of them really helped, though I recently found a craniosacral practitioner who has helped. The other thing that I've recently found I could do was cycling. I was afraid to try it, but I did, and strangely, it didn't affect my pain. So now I still have to lie down wherever I go, but I can cycle some places (and then lie down). It gives me a bit of freedom and exercise. If you try this, just start with going down the street and back. The trick with chronic pain is to do things gradually, and build up. I don't know if anyone's taught you pacing, but Paton above is right, you need to pace everything you do. I have a timer, so I can time my sitting, standing, etc. You need to change position before it starts to hurt. So you'll need to do some timings first to see how long it takes before the pain increases. Once you have your timings, you can then add 20% each week, as long as the pain is stable and you don't have any flare-ups. It's not easy, and there will be many set-backs, but there may well be a path out of this. Or at least to a place of less suffering. Don't worry about the painkillers for now. I am on about 9 different medications (including Fentanyl) and without it, I wouldn't be able to do even my 4 minutes. Once you are a bit better, you can think about decreasing. And you can also consider a different mix of meds – try out some different ones to see if they work better. I just started taking Celebrex as my anti-inflammatory, which helps more than Naproxen or Ibuprofren.

I'm sorry you're going through this. It's not something I'd wish on my worst enemy. The depression is a natural reaction to this situation. I am on 2 different anti-depressants – this does help, but when I overdo things and the pain is even worse than usual, I get very depressed and feel hopeless. Try not to compare yourself too much to how you once were – this will just upset you. Your previous life is on hold, for now. Try to find positive things you can do while on the sofa – things like writing, playing a musical instrument (I've figured out how to play guitar lying down!), reading, doing an online course – anything that will distract you, even a little. And someone above mentioned mindfulness. This is a great thing to do. There are many CDs out there. I really like Jon Kabat-Zinn, he has some guided meditations that are really good. Some of them are specifically for people in pain.

Thank for that it's really good to get help seeing how other people find ways to cope, ways to change and Pick there out of a situation they never choose to be in. I keep my mind open for any solution or Ways to escape the pain. I wish I could cope with out the pain relief but it's to severe.